Thursday, January 2, 2014

We had a normal night... She has to get up and eat every three hours... But she went back to sleep each time... She had her electrolytes ( glucose and sodium) checked again this morning... And they are normal still... Because her glucose was low yesterday, she had to be pricked till midnight last night just to make sure... After 6pm yesterday it has stayed normal... We have decided since we will be here another week at least (I'll explain in a minute), not to ween her off the sodium supplements yet, this way we know that her sodium continues to stay where it's suppose to.... Since her urine output hasn't improved very much, we know that this is not a protein abmorality, but they know for sure what ever the problem is has to do with her kidneys... So, she was tested for this rare disorder called cystinosis... It is quite complicated so I have attached the website for more information... They had to take 5 ml of blood, and send it to the Texas genetics lab... We have to stay till the results come back, which takes about a week... She has to be monitored very closely if she was to have this, she shows all the signs for it, but research has improved over the years, so it's kids have a brighter future... Since no protein issue, we are still on enfamil formula but at a 24 calorie, we still have to deal with the the weight issue, so we trying this again before the fat tablet... She weighed the same this morning at 8.6, and tonight she gained an ounce (8.7)... She has been very fussy today, so we spent a lot of time, chasing dr. Jenkins down the hall... Everyone is just in love with my baby... I have to admit she is rather cute. Go online to the website: Cystinosis Research Network (https://cystinosis.org/what-is-cystinosis/symptoms-treatment)